Help with test results please - Addisons disease?

[Princesspea]

Hi all

I havent been on this forum for a while but have come unstuck in my ongoing quest for health!

I have gone through being on Levo then onto Armour (under Dr S) but couldnt get passed 2 grains due to other symptoms. I am now on T3 only and trying to resolve my other problems. I came off my meds recently (for unrelated reasons, long story) and had some tests done. These tests show that I have very low cortisol still (24 hr saliva) despite 6 months doing CT3M and a few months on nutri adrenal extra (had to stop due to adrenaline surges). They also show high blood glucose, normal/highish aldosterone, high renin and inflammation. I have high blood pressure (which shot up when i came off T3 despite medication and has since gone back down now I am back on it although im still on 1 med) and am overweight.

I believe that high renin with top of the range aldosterone is an uncommon situation to be in. I am on the verge of starting HC for my cortisol issues but Im scared I will make things worse. I have no GP support and no private doctor support at this time.

From my reading it would appear all the above issues are interlinked. Could it be Addisons disease? My cotisol results are quite bad.

Many thanks

Gail x

[Moggie]

Could I ask why you have no medical support at all.

Moggie x

[Princesspea in reply to Moggie]

I am one of those with 'normal' tests results. My GP does not entertain in any way that I have thyroid issues and doesnt believe in adrenal insufficiency. I was under Dr S and have not as yet found another doctor.

Gail x

[Moggie in reply to Princesspea]

So why don't you change your GP - I would rather do this that try to go it alone. If you are not seeing him for the above issues, because you have no faith in him, then it isn't worth being on his books and you could be lucky and find a more supportive GP who is willing to help.

Moggie x

[Princesspea in reply to Moggie]

I live in Scotland and up here you have to go with a GP practice that you live in the 'catchment' area for, where I live there is only the one that I live in the catchment area for. I have tried all the other local ones and none will take me on so I am essentially stuck. The GP I see is the head GP at the practice and I have to see him as he essentially blocks any of the other doctors taking my thyroid issues any further (most of them agree with him anyway!) I am well and truly stuck.

Gail x

[silverfox7]

I appreciate the lack of interest in the saliva test. My GP was indifferent as well and said she didn't understand it but I would have been more confident in her had she taken a copy to peruse later! Is there any chance of seeing an Endo? I should contact Louise and ask for the list and see who might be helpful and ask it you can be referred. If you are refused I'm not sure what happens next but I feel for you being so isolated.

[Princesspea in reply to silverfox7]

Hi, thanks for your reply. I think he would laugh at me if I asked for a referral to an endo. He is very superior and my views barely count! I am considering seeing the private endo down south Dr SB but I am just information gathering at the moment.

Many thank

Gail

[silverfox7 in reply to Princesspea]

I thought that might be the case but also felt if he refused you would have grounds for lodging a complaint. Would you need a referral though to see this doctor?

[Princesspea in reply to silverfox7]

Yes but at the moment I can go without one if I can get my Dr S notes, she will accept that also. Ok good point, it's maybe worth a fight then, it just gets so tiring fighting on all fronts all the time doesn't it!

[silverfox7 in reply to Princesspea]

Yes it does and in many ways you can't afford to fall out with your GP if he's all you have got. Why does life have to be such a dilemma! Where are all the GP's who have gone into medicine to make a difference. It would be great if they could at least start listening and may be admit that they are out of touch. Science is moving on all the time and yet they fail to at least acknowledge this. So many of us have supported Dr Skinner and still no one really listened and got the message, least of all the GMC. Please keep us posted. Just a thought, we know all about the ladies and the Scottish Parliament, does your GP? He might be more receptive to something happening on his own doorstep. Alright he may not agree but he may then realise more of the depth of suffering.

[Hidden]

I didn't think a Dr. could refuse you!

I'm with Silverfox7 on this one.

Can I ask Gail, why did you get all these tests done in the first place?

I have so much to learn and I had no idea that most of my health problems were due to hypo/Hashi. I wish I had. X

[Princesspea in reply to Hidden]

Ok I will give it a go, thank you. I'm probably about 18 months in on this so those weren't all tests I did right off the bat. I started with thyroid panel, b12, Vit d and a 24hr saliva cortisol to check adrenals. Then I have just gone from there, as I have plugged one gap I have researched to see what other 'gaps' there could be and sometimes that requires different tests. I didn't get all those from my GP tho I have had to pay privately for them. X

[Hidden in reply to Princesspea]

Ok, so you're feeling crap and are basically trying to rule out things.

I had no idea what was wrong with me either Gail. We were having a terrible time with extended family and I genuinely thought I was about to die!

Sounds dramatic eh?

I have chronic pain due to spinal injuries, I started with nose bleeds, tiredness, more or less stayed in for a year. It's only when I collapsed several times they finally did some tests.

I wish I had been more pro active like you.

Good luck with your search Gail.

X

[silverfox7 in reply to Hidden]

I started thinking along the same lines as Gail and trying to eliminate stuff as I knew my surgery not very responsive.

[swmartin]

High blood glucose, normal/high aldosterone are not typical of Addison's. See this link:

cks.nice.org.uk/addisons-di...

see under 'Diagnosis' & 'Confirming the diagnosis'

Perhaps the low cortisol comes from taking the Nutriadrenal and your body need time to adjust to being without it (steroid induced adrenal insufficiency or low cortisol levels).

See Wiki for 'Plasma renin activity' - any history of high blood pressure in your family?

[Princesspea in reply to swmartin]

I had a look at a lot of the Addisons pages, some of the recent research being carried out suggests that in some cases of Addisons there can be high renin/highish aldosterone etc. I dont think I have it Im just looking to rule it out completely. I have had the low cortisol for many many years before taking nutri adrenal so the two cannot be linked. As far as I am aware there is no steroid component to nutriadrenal? I have had a look at plasma renin activity then into essential hypertension but it doesnt tell me how to solve the problem. Yes I am overweight but many of these issues date back to when I was not overweight so I am not convinced that high bp was the original problem. I do have a bit of a family history but I still dont see from that how to solve all the problems?

[Marylyn]

I have been unwell for 12 mths like you I have low cortisol levels also B12 deficient,liver & gut inflammation now inflammatory cells in urine.I have been taking methyl b12,b5 for adrenals which has given me more energy but continue to have early morning episodes tinnitus,nausea,pins& needles in hands & feet.I believe my ill health could be adrenal related.I am not taking thyroxine due to overmedicated Tsh levels okay.